Long Archives - IIH Hub

IIH patient diagnosed in 2023

“Living with IIH feels like being part of an experiment none of us signed up for. I’ve had to become an informed self-advocate and stay open to challenging my own assumptions, remaining flexible when things change.”

An Update From Alicia

“This journey has been painful, exhausting, and uncertain, and I am still seeking lasting relief. But I refuse to be defined solely by my diagnosis.”

Jim

“My instincts told me that I had to keep pushing and that I had to keep my body as active as possible because I didn’t know where all of this was leading. “

Nicole

“I know everyone says to trust your gut, so I’ll say trust your headache. Your pain is real, and ‘borderline-ish’ does not serve anyone.”

Alicia

“It’s challenging to describe this invisible illness and the severity of how living in chronic pain everyday can change one’s life.”

Kiki

“I was aware that the recovery from this rare life changing and challenging condition was also a rollercoaster recovery.”

Morgan

“Don’t be scared to take loved ones to medical appointments if needed and don’t be afraid to ask for help when you are struggling.”

Ashley Carter

“As I’ve started a healthier lifestyle, I don’t feel that IIH is necessarily weight related, but more so related to what we eat.”

Chaniya Wigfall

“I have my life back and I wouldn’t change a thing.”